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Home-HD Symptoms

Don't Forget-Quick Reminders
Physicians Guide to the Management of Huntington's Disease
The Cognitive Disorder (CHAPTER 4)
Lack of Initiation
Perservation (fixations)

Lack of Initiation

Some family members complain that the person with HD "just sits around all day and won't do anything."

Regulation of behavior involves getting started, maintaining the desired behavior and stopping unwanted behaviors.

The initiation, or starting of an activity, conversation or behavior is often compromised in HD. A lack of initiation is often misinterpreted as laziness, apathy or lack of interest, and may be a reason for poor performance at work.

Once started, persons with HD may be able to execute the behaviors adequately (i.e., compute taxes, calculate sales, administrate employees, teach school), but may be unable to organize and initiate the behaviors at the appropriate time.

External initiation often helps the person with HD remain active and participate in both social and work activities.

Keeping a daily routine can minimize the need for internal initiation. Maintaining the desired behavior is usually less of a problem for persons with HD.

If this aspect of regulation is impaired, however, the HD patient may be unable to regulate ongoing behaviors in an appropriate manner.


Perseveration, or being fixed on a specific thought or action, can occur when behaviors are inadequately regulated by the brain.

Spouses often report that patients become behaviorally rigid, and tend to get stuck on an idea or task. Established routines and gentle reminders of changing tasks can help avoid problems.

An activity that is atypical for the established routine will be particularly stressful and challenging for the person with HD. For instance, travel out of town, or a visit to the doctor or dentist, may disrupt a safe routine.

When shifting to a new task, help prepare the person with HD and allow plenty of time for him to adapt to the new idea.

There is a delicate balance of how much preparation is needed. Telling of a change in plans too early can cause increased anxiety.

Typically, inform the HD patient only one day prior to an event or a few hours before. Allow plenty of time and frequent gentle cues to allow the shift to take place.